ellen

1. Probably never, since I have had POTS for so long. (Is that "0" ?) 2. 2: florinef and midodrine 3. 120 minutes 4. 14

Jenwic, I use Natural Instincts every two weeks with no trouble. I only touch up the roots to avoid too much time with my hands over my head.

Several posters have asked for doctor recommendations, and I don't see any on the Dinet website list from Arizona. I have been seeing Dr. Darren Peress in Tucson, AZ for several years and was impressed at my last visit when he said he talked to Blair Grubb about POTS. He has shown a willingness to listen and try different approaches.

Yes I have coat hanger pain but when I described it to my old PCP he had never heard of it and dismissed my complaint as the most common complaint he hears "from people your age" (50). But I've had it since my thirties. I got a new PCP who referred me to a rheumatologist, and she told me I have degenerative disc arthritis in my neck. I take Tylenol arthritis formula.

Willows, that's encouraging news about the new doctor. Hope all goes well with the tests and you get to the bottom of Mike's problems (and yours as well!). -ellen

Thankyou all for your response- Masumeh, please let us know how you do on the mestinon, especially if it helps with the other POTS symptom. Pat-that is a very interesting article!

My EP wants to try mestinon, but can someone tell me specifically how it affects them, not just "helps with my symptoms". It has a risk of Cholinergic crisis, (can result in death), which scares me. How great is this medication, and exactly how does it improve symptoms?

Yes, Pat is so right. I'm surprised the lady doc called for a pillow under Mike's head. I had a similar faint in a doctor's office and they insisted I sit in a wheelchair; as I tried to put my head down to increase the blood flow someone forced me to sit upright and I went OUT completely. I heard the poor doctor cry, "Call 9-1-1!" I ALWAYS ask to lie supine when having blood drawn. Feet elevated is even better! I hope Mike is getting the medical care he needs.

Like Tearose, I like my Polar watch. My battery ran down after 2 years, I shopped around and finally took it to Batteries Plus, for a small fee, maybe 12 dollars. They don't guarantee it's waterproof, but at that price, I am very happy with it.

!!YES!! I had to respond to this one post- usually it takes too much energy to post (I admire all you who do it so often), because fatigue is my main complaint with this illness. I would love to be able to work, but I have to SAVE my energy for the basic necessities like making dinner doing laundry, paying bills. I find I have to BUDGET my time and lower my expectations, so at the end of the day I have accomplished at least the minimum. You have to find a balance between "coddling" yourself and being overburdened, both of which can make the condition worse. I find I have to say "I can't" to people who ask me to do something extra for Them, and say "I CAN" when it comes to doing something for myself, and NOT feel guilty!

Thanks Gayla for the pix- they brightened my day !

My teenage son used it (about half as often as he should have) with remarkable results. It is well worth the monthly blood test, however he had terribly dry skin initially. Big dry flakes. But his acne was so bad, he stuck it out and had CLEAR skin for several years. It was like a miracle.

I wasn't diagnosed until 50 but I first developed serious symptoms at 35, docs just couldn't give it a name.

NO SWEAT! Literally. I don't sweat unless I'm faint (clammy cold sweat) or interestingly, during my tilt table test. So I CAN sweat, but it's unusual.

Meg and Deb, you are so right. I have been miserable trying to "get better"! I just took an extra dose of florinef and feel so much more normal.